http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9955
Fri, 23 Aug 2013 13:59:54 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79168#p79168
Desiree, I just posted on your other link first. We were of the same mind here today. I believe that was your Mother. A Butterfly is free and beautiful and I think she wanted you to know she is just fine and very happy just as she would want you to be. You sounded very good to me today, I like that. This Butterfly episode could be your first entry in a Journal.]]>Fri, 23 Aug 2013 13:59:54 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79168#p79168http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79165#p79165
When I arrived at the end of the biking trail, I usually got off my bike, wipe the sweat off my face with my small clean 100% cotton towel, cool down in the shade, & drink ice cold water from my Camelback. I usually hang my helmet on the biking handle, put my biking gloves in the helmet and pour some of the water from my Camelback on my face to cool down.

All of a sudden, a Monarch Butterfly came out of nowhere, and sat on the side of my hanging helmet for the longest time. I even took pictures of her. Then a second Monarch Butterfly came and sat close to the first one for a while but then took off. The first butterfly moved to the inside of my hanging helmet and sat on the my biking glove, so I started taking pictures of her with my iPhone. I knew that was my Mother!!! The butterfly was there for the longest time and I just admired it and waited until she was ready to fly off again, which she eventually did. Is that odd or what? I wish we could post pictures here as I would have done just that.

I still have my train wreck days and then my okay days.

Bless you all!

Desiree

]]>Fri, 23 Aug 2013 11:26:13 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79165#p79165http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79147#p79147
Dear Pam- I am so very sorry to learn of the passing over of your dear daughter Lauren. I do not visit this site as often since my husband died 2 years ago, though I think if my cc family often.I hoped your story would be different- I am sorry Pam for you and your family and friends. I am sorry for Lauren so deserved so much more. Xxx]]>Thu, 22 Aug 2013 22:19:58 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79147#p79147http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78629#p78629
Pam I think that will make you happy as I am. When I feel down I just read my Log and I know T is all around me. By the way T was one of his nicknames so I am not being disrespectful. Can you imagine as of last week, 87 Teddy winks in 2 1/2 years!? Now if that isn't comfort I don't what is. I just date it and number it and write a very brief note as to what happened. A few months down the road you will look at Laurens 'winks' and say to yourself, "Wow she really has been around here a lot". LUV YA!]]>Sat, 10 Aug 2013 03:37:13 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78629#p78629http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78623#p78623
Hi Clare,

]]>Sat, 10 Aug 2013 02:14:15 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78623#p78623http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78568#p78568
Pam, oh my goodness, I hope your Dad is doing better every day. Gosh it's always something, yes? Pam you are a perfect example of the 'sandwich' generation, taking care of parents and children. Pam I don't think Lauren and Teddy come when asked. I have been told they need to store up energy to do what they do. That buzzing you heard? I had that on my Birthday but it was more like Teddy's picture rattling, yet not moving. I finally figured out he was singing Happy Birthday to me. It rattled for at least 5 minutes then jumped to a wedding pic of us and rattled there. Lauren is learning the ropes but you are lucky that she has been around so much! Take care. P.S. Are you keeping a log of visits? It sure helps to read it when you are missing her.]]>Fri, 09 Aug 2013 12:56:44 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78568#p78568http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78561#p78561
Hi Pam,

I think my post may have been a bit insensitive about dying at home and I apologise for that. There is nothing wrong with not being at home and dying in hospital - I' m in no doubt that Lauren knew you were with her and that someone was always with her in the hospital.

It's been 4 months since my sister died and in the last month, my mum also describes a calmness like you did above. She feels her daughter with her a lot and gets a smell. Usually when things are at their hardest for mum or when she has my sisters daughter with her is when it's most powerful.

]]>Fri, 09 Aug 2013 07:13:44 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78561#p78561http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78557#p78557
Thanks, Lainy. My Dad just had heart surgery last Friday and everything went great. Then out of the blue Sat. morning both his lungs collapsed and he almost died. They used emergency measures to get them reinflated and put chest tubes in. Poor guy had just been taken off the ventilator the day before and had to be intubated a second time. He is so strong and even at 81, by Sat. night he had the breathing tube removed and was walking!! He just got out of the hospital this evening and is doing great. It was hard being back in the place where Lauren died, but I did ok. Only one meltdown when he was moved to the regular floor from ICU and it reminded me so much of Lauren's first surgery when we were so full of hope. I still read your witty banter most days and can't wait to get back and be able to go back and forth with you.

I do want to ask you one more thing. I ask Lauren every night to come and see me in my dreams, but I don't feel she ever does. I do feel she is around and when I reread this thread I got a huge smile on my face because a while ago I was laying in my bed and I heard a buzzing noise that I couldn't figure out what it was. Probably Lauren, right? Also, sometimes I feel so peaceful and calm. She is probably around then too. I see a white butterfly every time I am at the cemetery. Lauren? Not sure about that one because she hated butterflies, plus I think she might be a little jazzier than a white butterfly. We find lots of pennies in weird places and strange things happen sometimes. Lauren or coincidence? I sure do miss hearing her voice and seeing her. Tomorrow it is 2 months since she has been gone. Take care Lainy, and all my CC friends. I love you all.

-Pam

]]>Fri, 09 Aug 2013 03:35:02 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78557#p78557http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78553#p78553
Hi Pam, it does my old eyes and heart good to see you as you are very missed. Take your time, only you will know if you want to and can return. Love you and certainly miss my partner in the humor department! Bless your family.]]>Fri, 09 Aug 2013 03:06:22 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78553#p78553http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78552#p78552
Hi Renee,

I haven't been on here much since my daughter, Lauren, passed away in June. She passed in the hospital surrounded by her family that loved her more than anything. I don't think it mattered where she was as long as we were all with her to say goodbye. Poor kiddo never regained consciousness after surgery, so I hope she knew we were there. We miss her so much. You are very brave to face things head on, but I pray you find a great clinical trial.

Love,-Pam

]]>Fri, 09 Aug 2013 02:54:50 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78552#p78552http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78546#p78546
Nice. Clare and if I may add one more thing. I had Teddy's hospital bed in the living room. That is where the BIG TV was. The room was light and airy and he could see me all day putzing in the kitchen. Visitors were comfortable as well in there and there was plenty of room for the Hospice Nurses to work around him. Yep, it was good and he was happy.]]>Thu, 08 Aug 2013 21:53:41 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78546#p78546http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78542#p78542
Hi Renee,

You are so brave for asking and being so selfless in putting your husband first. I think it is so important that this is spoken about.

I can't speak for my brother in law or the rest of the family but I was just relieved that my sister got the chance to tell us what she wanted and got what she wanted. My sister died in March, at home in a bed in her living room. She was told 2 weeks before she died that she would not be getting chemo and had at best 2 months to live. She said at that point she wanted to go home and she planned her funeral with her husband.

Prior to her being told there was no more could be done, I knew she had at best a month to live and was pushing for help so decisions could be made. Her GP asked me would she want to be at home or hospital and I had no idea. Her daughter was 3yrs old and I didn't see how my sister being at home as she died could be done without it being too distressing. Hospice was not possible as it is 2.5 hours away. Being at home meant she wasn't in a hospital, miles away from us all. It meant she was in bed in the middle of the house so when any of us were there, she was not isolated in a bed upstairs and was still very much with part of it all which she wanted to be. I still see the bed and her in it but it doesn't distress me and it doesn't seem to upset her husband or her daughter. Her son I don't know yet as he's 18 and has said very little about her dying.

I do think 'this is where she died' when I'm in the house but I know that had it been a hospital, we all couldn't have been with her the way we were for 36 hours. Just us, peaceful, her new candle on, surrounded by all the things that mattered to her. She'd had enough of being in hospital. Its hard being in her House now but not because she died there- it's because she's not there anymore.

]]>Thu, 08 Aug 2013 20:53:49 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78542#p78542http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78514#p78514
Oh, Renee, I wish I could jump right through the computer and make everything bad go away! BTW you post wherever you want and I love the visit back to this thread and our "Believers" Club.First I hope that you and your loved ones talk about where you are at. Talk, talk, talk. It will make this journey so much better for all. I think the patient sees things from a different perspective as I never looked at things, like a house, and felt it was where Teddy passed. I looked at everything as wonderful because it was part of Teddy. I still had all these things around me that were Teddy and that made me feel good. A year later I did sell the house and move to an apartment. I changed cars as I wanted a smaller car. I just gave the last of his cologne to a Grandson who said he loved Papa's colognes. About everything has been given to family members and I have a huge picture of Teddy right where we can see each other. Now, this is the strange part. I have been so strong, yet I cannot talk out loud to the picture. It upsets me too much. So, I have learned to talk to it silently if you know what I mean. Teddy actually prepared all of us more than we prepared him for what was to come. T & I planned his Memorial, and when we got the final prognosis of about 6 months he prepared packets of all his jewelry and stuff and all the kids gathered with us in Milwaukee at a lake for a week and he spent his time being alone with one at a time. He gave his words of wisdom and their little packet. He was quite the planner. He was Sicilian (Catholic) and I am Jewish and he sang in Temple in the choir with me for 15 years so he asked his Priest if the Rabbi could be on the Pulpit for the Memorial. The Priest and Rabbi came for lunch and said of course they would do the Memorial together! First time EVER that a Rabbi was on the pulpit at this Church. And both choirs sang. I know everyone handles things differently but I believe that things are what one makes of them. You are the boss here and you will set the pattern. I am going to email you separately about home vs Hospice and will also give you my phone number. BTW laughter also helped get us through!]]>Thu, 08 Aug 2013 15:47:09 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78514#p78514http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78512#p78512
Thanks, Lainey, for making me write this through teary eyes. I have never cried for myself, even knowing that this is a terminal disease. When I cry, it is for my husband and the pain he feels now and will feel for some time after my passing. For some reason - maybe my medical background? - I have been able to take a logical approach to this journey, hence the reason for this entry.Right now it is 'easy' for us as I don't have any pain or symptoms, just a good liver gone bad...and getting badder by the moment. I think it was Kris who wrote that people would approach her and say 'but you look so good', and that happens quite a bit to me...I think mostly because of the much-needed-weight-loss However, chemo treatments are failing, and unless I can get into a life-extending Clinical Trial - like the one in NIH that Melinda attended - I expect things to start going downhill fast.

So I have a question to ask the Caretakers/Spouses/Loved Ones:Was it/will it be easier (if one could even use that word!) having your loved one pass away in your home or in the hospital? Please don't think of me as being morbid! Sadly, I am a planner and like my ducks in a row when possible. I am concerned that John would look at the house that we built together and think 'that is where she died'...just thinking/writing this is making me cry again. I would like to make this as easy as possible on him and wonder what your thoughts are on this delicate subject.

I hope this is not hijacking a rather wonderful thread. I don't know where else I could have posted this. Thank you for your indulgence, Renee

]]>Thu, 08 Aug 2013 15:05:03 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=78512#p78512http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=77071#p77071
I love the poem Lainy. Between your poems and Pam taking a moment to send me a few words, my heart is filled. I truly feel blessed that I found this website. You all are so awesome.